1/02/14 - beautiful photos

Back in January we booked a cake smash photo shoot for Ellie's birthday. It was an expense we probably couldn't really afford, but I wanted to capture some beautiful shots of our little girl for her birthday, and I always regretted not doing it for Sophie's birthday.

Choosing a photographer is always hard, but when your child has a cleft, even once it's been repaired, it's a little bit harder. You need someone that is sensitive to the scars, but that won't make a big deal out of them either. We are incredibly lucky to have found the gorgeous Felicity Turner as our photographer. 

In august last year we had a family photo shoot with Felicity, and I loved her style and attitude. She is very warm and friendly, and of course, creates amazing art with her camera. So for us it was a no brainer. We arrived at her studio and were made to feel very welcome - I even got coffee! 

Felicity did a great job as usual, and we are so happy with the photos.

https://www.facebook.com/felicityturnerphotomedia?ref=ts&fref=ts
have a look at Felicity's facebook to see more of her amazing work! 

27/01/14 - eerily quiet here

Considering we usually have a million places to be each week, thinks are very quiet right now. Ellie should be having her 12 month reviews with her specialists, but everyone wants to wait until after her palate repair. Which means we are in limbo. We are still waiting to hear from the respiratory specialist and the ENT, which is making me more and more angry as the days go by.

But I am enjoying just having time to spend with Ellie, instead of rushing her off to appointment after appointment. Things will change after her surgery for sure, and I'll be dreaming of this quet time again!

20/01/14 - no more stinky ears!

Ellie's ears are clear!

It has taken three months, three courses of antibiotics, two courses of ear drops, but finally, FINALLY, there is no infection in there! The smell is gone, the discharge is gone, and her mood has improved so much because of it. It must have been horribly painful for her over the last three months. I'm glad it's over. I just hope we can keep them clear until her palate is repaired, and that everyone is right when they say the palate repair will stop it from happening again! 

Meanwhile... We still haven't heard from the ENT team in Hobart. How slack is that? This health system here s starting to really annoy me.

19/01/14 - communication

I am really surprised with how much of a difference the sign language has made to Ellie. Before  we started, she was always growling and yelling because she couldn't say what she wanted to say. But after only a bit over a week, her mood has improved and she is starting to communicate with us.

No surprises, but her her first sign she picked up was for food! That was followed by drink, play, and thank you. But what has surprised me, is that through teaching her these, she seems to have pick up some verbal speech as well! It might not be clear like most babies, but she can now say car, ta (thank you) and mine. She might have even said Nan the other day. 

I love how clever she is. And so does she. Whenever we respond to her signs she gets really excited, and looks so proud of herself. 

Yet again, Ellie has seen a hurdle and smashed through it. How does she do it? 

13/01/14 - Speech review

Ellie needs to have a review done with all of her specialists at important milestones. 12 months is one of them. We got the letter for her speech review in the mail last week, but Sarah, our speech pathologist was on holidays. She called today, and like always, she was happy to do the review over the phone, rather than dragging us down to Hobart.

I broke the bad news about Ellie's cancelled surgery. Last time we saw Sarah was the day after Ellie stopped breathing during surgery, and she had said then that we were walking a fine line to avoid massive speech delays. She will be organising for Ellie to have intensive therapy after her repair, to try and get her back to standard speech. Usually clefties don't need much in the way of therapy until they are three years old, but because Ellie's repair is so delayed she is getting used to how her mouth works now, and the challenge will be to break her from her current habits and patterns.

We had a chat about the grommets too, and I asked if they are really necessary from a speech perspective, given that her hearing loss was limited to begin with. Unfortunately she thinks they are though, so I guess I have to let them stay in. I'm still not 100% convinced though. She is going to organise some extra hearing tests for us, to check how things are in there right now before we make any decisions.

Last week I started teaching Ellie baby sign language, as a way for her to communicate with us. Sarah was excited, and said she was going to suggest it to us if we hadn't had our repair surgery! So points to me for being awesome! 

I have to admit, I got off the phone feeling pretty down and out. I was hoping that the news would have been a  bit more positive, but at least we have a plan in place. I've had to change our health insurance extras to allow us a higher level of cover for speech therapy, because our local free clinic won't be able to over the intensive level of therapy that she will need.

I guess like everything on this journey, we just wait and see how it goes. Ellie might never have perfect speech, but she will one day be able to talk to us. One day. 

9/01/14 - No real improvement

Ellie has finished her first course of antibiotics, but her ears are not getting better. There is still a horrible green discharge, and they still smell really bad. So today we went back to doctor Naiker for another check up.

He wasn't really surprised, because staph is such a hard bug to kill, but he does think we might need some more specialised care. He has referred us back to the ear, nose and throat tam in Hobart. He also put her on a second course of antibiotics.

 I am so frustrated with these grommets and the trouble we've had with them that I'm very close to telling them to take the stupid things out and leave them out. I know that they really have improved her hearing, but is it worth the pain she's in now? 

8/01/14 - Happy birthday Princess

Today is an incredible day.

 Today my baby girl turns one. 

It's been a big year for her. There have been a few times when I didn't know if we would get to see this day. She battled to survive even before she was born, and she had such a rough, scary start with being taken away from us and connected to so many wires and tubes to keep her alive but she survived, thanks to the incredible hard work and skill of the obstetrics, paediatrics and neonatal teams in Burnie and Hobart, and a selfless blood donation from a stranger. 

she's been through two surgeries, and fought to stay with us again when her lungs gave out and she stopped breathing. The thanks for that one goes to the quick thinking of her surgeon and her anaesthetist. 

she has overcome the horrible reflux demon, battled countless chest and ear infections, even the staph that's currently trying to take over won't stand a chance against her. 

But most importantly, she has brightened the lives of everyone she meets. Not just our family, but her doctors and nurses, her specialists, strangers in the street. She is teaching people compassion, and bringing the best out in us all. 

Her next year will be full of a lot of the same challenges, but we know she has the strength and determination to keep going. 

We love every millimetre of her, and her laughter is worth every millisecond of the bad times. 

HAPPY BIRTHDAY ELEANOR ROSE. 

6/01/14 - No surgery for Ellie

This morning I calls doctor Kimble's office to find out what will happen with Ellie's surgery. I really didn't want to make the call. One one hand, I desperately want her surgery to go ahead, so that we can get it over and done with and move on. But on the other hand, I also desperately ENT want them pushing her through if there's a chance she might not be alright. Catch 22: nothing doctor Kimble could say was going to make me happy.

My called was answered by his lovely receptionist, who was less than surprised when I said I'd tried to call the hospital but couldn't get through to anyone there. She said she would wave Ellie's file under doctor Kimble's nose as soon  as he got in, and he would call me back.

I was expecting to spend the day anxiously waiting for a phone call, but instead I was talking to doctor Kimble within 10 minutes. He agreed with me that the surgery needed to be cancelled this time. He can't operate on her when she has a staph infection, and her reaction last time means that he's just not prepared to touch her if she's not 100% healthy. He said he would call next week and see how things were going, and then we would make a plan then.

Even though I knew it was going to happen, and I'd been hoping for it after all, I was still deflated. We wouldn't have to make the trip to Hobart unnecessarily this time, but we had still rearranged out entire summer for nothing, and now we would have to do the same again.

Today was one of those days where I spent a lot of time selfishly feeling sorry for myself. 

4/01/14 - celebrating in style

Ellie's birthday this year falls on a Wednesday, so we decided to move the celebrations forward a few days so that everyone could come and have so fun. There are so many friends and family who love her dearly, and I wanted them all to have a chance to be here and celebrate what an amazing journey she has been on this year.

I made an incredible cake, with a hungry caterpillar theme, and we planned a BBQ in the backyard, with a jumping castle for the kids. I cheated after spending a week working on the cake, and ordered pre-made salads, so all I had to do on the day was set everything up, and I was far less stressed than I normally am when I'm hosting an event. Here's the cake....

Typical of Tasmania, the weather wasn't great. There were a few quick showers, but we managed to keep everyone outside anyway. Everyone was having too much fun to be bothered by a little bit of wind and rain. The kids loved the jumping castle, and the grown ups stood around talking and laughing. It was brilliant. Ellie stuffed herself with sass ages and potato salad, her new favourite food.

Ellie was very spoilt, and got showered with beautiful presents. A birthday two weeks after Christmas, she's going to think this present thing happens all the time! She's still not great at opening them yet, but Sophie stepped up and "helped" her! That's what big sisters are for I guess! 

We would like to thank everyone that came and helped us celebrate. It wouldn't have been the same without our friends and family. 

2/01/14 - Confirmation of my fears

48-hours after her swabs were sent, I called doctor Naiker for the results. And while I wasn't exactly surprised, I was still very bummed out when he said the infection was staph.

Staph is a pain in the bum to get rid of. It gets in there and overstays it's welcome, and it's an oportunistic little bugger who will jump from one spot to the other at a drop of a hat. So knowing that her ears are connected with her palate, and that an infection post operatively could be a disaster, I knew that when I could finally get hold of doctor Kimble we would be cancelling her surgery.

Doctor Naiker has ordered that we continue the high strength antibiotics until it clears. She's probably going to need a second course, maybe a third. We just have to play it by... Ear. 

30/12/13 - really Ellie?

Drew and Sophie have gone camping for the new year, and I made the choice to stay home with Ellie, just incase being out in the cold of a night caused her to get sick. They left yesterday, and today Ellie has woke up with a rattle and a cough! What's with that?!

We had a horrible night, with Ellie waking up coughing at 3.30am, and no amount of ventolin, redipred or flixotide could stop it. I ended up sitting in the rocking chair with her, patting her on the pack and rocking her back to sleep. She eventually settled around 5.30am, but by then I was wide awake so I didn't bother going back to bed.g it to love getting 3 hours sleep with no hope of a nap during the day.

Luckily for us, I already had an appointment booked with doctor Naiker to have her ears checked. He looked almost as disappointed as I felt when he listened to her chest and found both her upper and lower chest infected. He increased her standard redipred dose, and ordered 2-hourly ventolin for 48-hours. 

Next it was time to deal with the stinky ears. I purposely didn't clean them this morning, so that he could see and smell how bad they are. The left side was bleeding again, and one look had him ordering swabs to find out what the infection actually was. One of the things I love about doctor Naiker is that he is always on the same page as me. He said it would be 48-hours until the results were back, but started her on high strength antibiotics just in case it was something serious. He also added a prescription for painstop to help get the ear pain under control. 

He didn't want to say yes or no whether the surgery would be cancelled, but we both new that it most likely would. I tried to call doctor Kimble after we left, but it is impossible to get anyone from the hospital or his office on the phone at this time of year. Everyone is on holidays, so we just have to wait until next week and see what happens. 

Even though I don't want it cancelled because I really want it to go ahead, I just want to know that we won't be travelling down there for no reason.